German Clinical Trials Register

Acronym/abbreviation of the study

No Entry

URL of the study

http://portal.uni-freiburg.de/imbi/bereiche/medinf/projekte/dmdeval

Brief summary in lay language

Empowerment of patients and their relatives is becoming more and more important. In this, health information for lay people plays a crucial role. A growing number of these information services are provided as applications for mobile devices, especially for smartphones. The benefits of mobile applications have hardly been investigated systematically yet. It is assumed that health information applications entail diverse benefits. Hereby, the greater interactivity of the applications to other media may play a central role. This is especially applies with respect to empowerment, under the assumption that appropriate action mechanisms are trained by the active employment. The aim of the project is to evaluate the effect of an application on the self-efficacy of Duchenne patients and their relatives. In addition, data on the distribution of the application, its usability and possible barriers for its usage will be collected. To investigate the question, quantitative surveys and qualitative interviews will be conducted with stakeholders. Primary target is the increase of self-efficacy in Duchenne patients and their relatives after the intervention with the mobile guidebook application. In addition, data on the use of utility services, the usability and the use of individual functions are collected. As intervention an application that contains the guide for families with Duchenne patients is used and extended by interactive functions (e.g. to document disease parameters or to remind of regular examinations). On the one hand, questionnaires with families of Duchenne patients that are registered in the register of Duchenne and Becker muscular dystrophies are conducted to collect data. On the other hand, qualitative interviews are scheduled with parents to gain information about their expectations and attitudes towards mobile applications.

Brief summary in scientific language

Background and significance: Personal responsibility and empowerment concepts are of increasing importance in healthcare. In this, health information for patients and their relatives plays a crucial role. A growing number of these information services are provided as applications for mobile devices, especially for smartphones. However, the benefits of mobile applications have hardly been evaluated systematically. It is believed that health information applications deliver diverse benefits. Hereby, the greater interactivity of mobile applications over other media may play a central role. This especially applies with respect to empowerment under the assumption that appropriate action mechanisms are trained by the active employment. The aim of the study is to evaluate the effect of a mobile application on the self-efficacy of patients with Duchenne Muscular Dystrophy and their relatives. In addition, data on the distribution of the application in the target group, its usability and usage, as well as any barriers for family members and patients in the health care setting are collected. To investigate these questions, a quasi-experimental intervention study with pre-test post-test design, and qualitative interviews will be conducted with stakeholders. Primary target is the increase of self-efficacy in Duchenne patients and their family memebers after the intervention with the mobile guide application. In addition, data on the use of utility services in the context of the application, the usability and the use of individual functions are collected. As intervention a mobile application is used, that includes a guide for families with Duchenne patients, which is extended to provide interactive functions (such as documentation of disease parameters, or memory function for regular examinations). On the one hand, questionnaire surveys with patients and their relatives are carried out to collect data, that are registered in the German-Austrian register for Duchenne Muscular Dystrophy and Becker. On the other hand, qualitative interviews will be conducted with parents of affected children to obtain information about the expectations and attitudes of the users towards mobile applications.